Eating concerns

[Sugardart]

For the last few days my mother has not/will not open her mouth more than 1/2" to eat her food. She says that she is hungry. We increased her Baclofen and added clonazepam. Do you think this is neurological or mechanical?

[laroux]

Hi Sugardart,

My husband can't open very wide, first noticed this 8 months or so before he was diagnosed, at the dental office (I am a dental assistant) I thought it was weird that he could only open a small ways, and it was difficult to work on him. Since then he has lost his ability to chew, those muscles just don't work anymore. Another one of those things taken away by PSP.

Joan

[Sugardart in reply to laroux]

Thanks Joan for your response. This is new and totally out of the blue. We've been able to manage with all the other oddities but this one has me stumped. How did he eat prior to his muscle loss?

[Hidden]

So sorry to hear about your mother's problems with eating. Sadly, with PSP the nerves that supply movement to tongue, mouth and swallowing muscles (also some face muscles) are damaged. This occurs at a different rate and different degrees in people with PSP. (Problems with speech and swallowing are given the technical terms of dysarthria and dysphagia)

If you haven't looked at the USA sight called "CurePSP: Foundation for PSP/CBD and related Brain Diseases", then I recommend it because it has education "webinars" and there's a video on "Coping with Swallowing and Communication Challenges" (go to the home page and at the bottom right click on "view the archives" and you'll see a list of helpful videos etc with the one I've mentioned.

All the best.

[Sugardart]

Thank you! I will look to see what there is to say. I appreciate your help.

[jillannf6]

ME TOO

I SHALL LOOK AT THE VIDEO

THANKS

JILL LOL

[Hidden]

It's usually mechanical. It can come and go. Mum kept freezing up towards the end but if I tipped half a teaspoonful of thickened tea into her mouth it seemed to remind her what to do and then we would progress again. We did find that more liquid style foods such as ice cream and custard consistencies worked better at that point. Make sure there is no infection lurking as that can cause set backs.Mum would get worse when she had a UTI.

Dianne x

[JoJo-K in reply to Hidden]

Hi Dianne

It's good to still see you here, how are you lovely?

Love & Best Wishes

Jo xxxx

[Hidden in reply to JoJo-K]

Thank you for making me feel welcome, I am doing fine, I still get flashbacks of the worse times and the funny times and hoping to get more of the latter. I worry that people might find it annoying that I am still hanging around. But I was hoping I could help others. I have also learnt a lot of things myself and realised how complex it all is.How are you doing?

Hugs to you xx

[Sugardart]

Interestingly enough, mom has had chronic UTI's since mid December. With all the antibiotics used they are only controlled for a few weeks and then back to being an infection. This has been a battle for all of us. Hospice was out last week and stated that they are concerned about her quality of life and believe that the time has come to quit using antibiotics to treat the UTI's. If I do this it will eventually lead to sepsis. I feel that as long as it is treatable the antibiotics should be used. When the Hospice nurse asked mom if she wanted UTI's treated she stated YES. How does a person assess the quality and desires of another person - a person they are not familiar with? Every day brings something new. She really has regressed in the last few weeks. I am exasperated trying to make professionals understand that I am her voice and I am advocating her wishes - not mine.

[Hidden in reply to Sugardart]

This was all the same with my mum and I persuaded the GP to put her onto a constant low dose of antibiotics but the main improvement was that she didn't take such a dive with the U.T.I.s-she still got them of course. But I did feel she was just floating along in a state of semi infection for about 7 weeks before she lost the battle. She was the same regarding eating and wanted to eat properly even though it would take an hour and a half to eat a meal -2 hours if she was unwell as she would need a nap in the middle of everything. Interestingly mum last spoke all day on the day her last proper course of antibiotics finished and before the prophylactic ones started. This was 3 weeks or so before she went. and it had been 2 weeks since she had said anything prior to that. She never spoke again.The sudden improvement raised a lot of questions that I couldn't answer. But she always perked up hugely when on a course of antibiotics! I had the same trouble with being her voice and it was one of the reasons I spent so long with her every day as it would take time for her to be able to tell me any worries or problems and I knew the care staff didn't have that sort of time.I think she appreciated it though, she would look at me with love and it made me feel I was doing the right thing.

It seems a long time ago now but it is only 14 weeks ago I was in the same position as you.

Try not to get too angry with others-they do not understand. I got all worked up and had to apologise to someone as I vented it. She was very understanding thankfully!

Take good care of yourself. This will not be forever and you are doing a diamond job. Your mom knows. XX

[Sugardart in reply to Hidden]

You obviously understand and your description could have been written by myself. I do try to be amenable to advise from experts. The exasperation oozes out once in a while. It doesn't help and I doubt that most people hear the message but rather the frustration, anger FEAR. Mom lives in our home so when there are bad days it is most evident. The good days (alertness, engaged, able to eat) are getting fewer and farther between even with antibiotics. It leaves me feeling inept and unable to make the days better. So..thank you for your thoughts and concern. We shall carry on!

[jimandsharynp in reply to Hidden]

Daughterno1, I found your posting very uplifting and helpful. THANKS!!

Jimbo

[Macd]

For the last 2 years of my wife's feeding whom could not open her teeth I fed her with pureed food and fed her by using a 60ml syringe directly into the area between teeth and her cheek. She would eat between 5 and 10 ml with each pump of the syringe. The foods that she eat pureed was 3 veggie and a protein of pork and beans. These were served in 2 different syringes. This worked very well but did take up to 2 hours for her to eat each meal. She refused to have a PEG installed as she wanted to taste her food.

She also drank an ensure or a Boast with each meal. The result was that she regained her weight and energy after the first few weeks of this feeding regime.

She passed away last month peacefully and at home after a 8 year and 2 month battle with PSP.

[Sugardart in reply to Macd]

Macd - Thank you for your feeding information. We will most likely be there sooner than later. Today she is able to open her mouth so this is a good day. Your wife was fortunate to have someone that would take the time and provide the care that only comes from a family member. I am sorry for your loss.

[jimandsharynp in reply to Macd]

Macd, thanks for sharing this information with us.

Jimbo

[jimandsharynp]

My wife doesn't have this issue but here's what I've noticed. Everything is reduced in PSP patients. For example: If I ask my wife a question her head nod for yes is VERY, and I mean VERY, slight. Another example: Handwritting gets smaller and smaller. Another: Voice seems to get softer and softer. It is my feeling that everything gets minimalized or reduced with PSP. Perhaps someone can verify that for us.

Jimbo

[jimandsharynp]

My first wife died of CJD another brain disease. At some point her mouth would slightly open then later not open at all. Even though I told her "If you don't eat you will get sick and maybe die". No difference she still opened small or not at all.

Jimbo

[Hidden]

Yes Jimbo all of that. I suppose it is inevitable as the messages to and from the muscles are apparently being hampered by the tau proteins clustering in the brain. It must be like trying to drive through rush hour traffic for them! I know mum told me she thought she was making bigger movements than she was and was most surprised to find her movements were so small. When she was talking we often had to remind her to 'think loud' to get more volume from her. Jimbo i can't believe you are having to go through all this twice. I take my hat off to you.

Dianne xx

[Kathy]

Hey Sugardart,

Mum can also have problems opening her mouth sometimes and I would definitely say that, for her, it is neurological. Changes in the frontal cortex can affect the way you respond to instructions and can alter "natural"reactions. i.e you would think that normally a spoon coming towards the mouth would trigger the natural response to open your mouth. However, with frontal changes that is not necessarily so and often the opposite reaction occurs - in Mum the response is to clamp her mouth shut. It's as if the brain has "forgotten" the mechanics of eating.

Sometimes we can get her to respond by verbal prompting/cuing by giving her a warning that the spoon is coming and saying "open wide" or " Say ah!!". Other times we have to give up for a while and try again later. Some days it can take an hour to eat half a plate of food!

Interestingly, we have found that it seldom happens with "finger food" that she is still able to feed herself with.

The thing to remember is that this is not something she is doing voluntarily or that is under her control.

Hope this helps!

Love

Kathy

[Sugardart]

Kathy - You're right on with the inconsistency of being able to open her mouth. Some days are better than others. She has a good appetite so I know that on the bad days she is hungry. We will keep making attempts throughout the day on those days that she doesn't open up. Thanks for your input. Kathy